I haven't written on this blog in such a long time! I started working and have been totally swamped with the that and the boys. With that being said, everyone seems to have adjusted well and we are all starting to settle into our new routine.
Merritt has another checkup coming up in the beginning of August. I am starting to get really nervous again. I have this terrible feeling in my tummy that we are going to get bad news about his LLD. He seems to have had a recent growth spurt but his left leg doesn't look like it grew along with it. I have been told that it is possible that his left leg and foot may grow at a different rate than the right. Anyone have any imput?
Tuesday, June 29, 2010
Wednesday, May 19, 2010
Used Orthotics
Merritt has outgrown his first pair of Mitchell Boots and his first Dobbs Bar. A little part of me wants to put both in a box and save them for forever, but a bigger part of me knows better! I found this website for donating used orthotics to needy children.
Here's a bit from the website:
In Uganda and Papua New Guinea they are utilizing used AFO's. "We accept its not ideal to recycle AFO's but there is no local skill for making custom splints. So it's a matter of having enough pre-loved AFO's to find one to fit the required foot. The kids are actually lucky if they get a pair of shoes to help maintain position."
I think this is a great purpose! I've found a few other charities on the web that are geared toward treatment of children born with clubfoot, but this was the only charity I found that actually accepts used orthotics. Does anyone know of another?
Anyway, I'm sending Merritt's in... I hope you choose to do the same!
Here's a bit from the website:
In Uganda and Papua New Guinea they are utilizing used AFO's. "We accept its not ideal to recycle AFO's but there is no local skill for making custom splints. So it's a matter of having enough pre-loved AFO's to find one to fit the required foot. The kids are actually lucky if they get a pair of shoes to help maintain position."
I think this is a great purpose! I've found a few other charities on the web that are geared toward treatment of children born with clubfoot, but this was the only charity I found that actually accepts used orthotics. Does anyone know of another?
Anyway, I'm sending Merritt's in... I hope you choose to do the same!
Playground fun!
A few days ago I thought it would be nice to get out to the park. "What's the big deal?" you ask. Well, here is South Florida it is already sweltering out. So, to be outside and be doing anything other than swimming is just ridiculous. What can I say? We are ridiculous! :)
Wednesday, May 5, 2010
Walking!
Hey everyone! As of May 1st Merritt is fully walking! woohoo! He is having so much fun being chased by his big brother. Actually, his first real distance was from our TV to the coffee table. Here's the story: Big brother was intensely watching Chuggington and Merritt decided to shut off the TV... of course. So, Big Brother got off the couch and started walking towards Merritt; You know, to show Merritt who's boss. Well, Merritt got the biggest smile on his face, squealed, and then walked as fast as he could to the coffee table in order to escape! It was SO CUTE!
Ever since that moment, he has been non-stop! Check out this video of our little man walking on the beach.
Ever since that moment, he has been non-stop! Check out this video of our little man walking on the beach.
Monday, April 26, 2010
Officially, "Get Merritt to walk week"
I have declared this week "Get Merritt to Walk Week" in our house. Merritt has been so close to walking for months now. Of course walking is going to be more difficult for him than your average baby, I know. I actually had Merritt evaluated by a non-for-profit in our area. The org provides services to kiddos who are in need. My goal was to get Merritt in some physical therapy... for free :) Well, in order to qualify Merritt had to score low on a Patel test (I need to google that and check the spelling... sorry!) Basically, a few specialists sat down with Merritt and played with him while scoring everything about him. He scored WAY to high to receive any services. The whole thing just makes me angry. Merritt didn't qualify because he is an intelligent little guy and because he doesn't have an "established condition." Of course, no one could explain to me what exactly that means. Fortunately, we are in a financial position where we can send Merritt to PT and just pay for it (well, for whatever our insurance doesn't cover!) But what if we couldn't afford it??? The non-for-profit would have just turned Merritt away just because FH isn't an "established condition?" Sorry if I am rambling! Anyway, point of all this... I guess this is where my education will come in handy. I am going to figure out this established condition non-sense and put a stop to it! Anyone with me???!!??
Aside from all that ranting... Merritt is doing well with his elevation on his shoe. I had to take the shoes to be "tweaked" a bit. The orthotist we see has been following Merritt closely and adjusting the bottom of his shoe to better suit the way Merritt stands and is walking. It is pretty cool and very helpful. He even cut off the original velcro for us and added laces. The velcro wasn't holding well at all. Lesson learned... always buy laces!
Hopefully, next week, I will be able to tell you all about how Merritt is chasing his brother around the house!
OH, and just in case any of you were wondering... I PASSED THE BAR!!!! I'm officially an attorney!
Hope all is well with all of you!
Aside from all that ranting... Merritt is doing well with his elevation on his shoe. I had to take the shoes to be "tweaked" a bit. The orthotist we see has been following Merritt closely and adjusting the bottom of his shoe to better suit the way Merritt stands and is walking. It is pretty cool and very helpful. He even cut off the original velcro for us and added laces. The velcro wasn't holding well at all. Lesson learned... always buy laces!
Hopefully, next week, I will be able to tell you all about how Merritt is chasing his brother around the house!
OH, and just in case any of you were wondering... I PASSED THE BAR!!!! I'm officially an attorney!
Hope all is well with all of you!
Tuesday, April 6, 2010
New Shoes
Merritt finally has his new shoes. We got them about a week ago, but I am totally slacking on keeping up with this blog! Hopefully this will get easier as the kiddos get older :) Anyway, just wanted to share a picture.
Hope everyone is doing well!
Friday, March 26, 2010
Decisions, decisions
I took Merritt to our CF doctor last week for his check up. Merritt's foot is doing well... whew. Dr. Ramono demonstrated some more stretches he wants me to do with Merritt a few times a day. I HATE doing them b/c Merritt hates it and it seems to be kinda painful. Of course, we are still going to do it, but I just wanted to complain a bit :)
I want to make sure that we are doing all the stretches correctly, so I am going to start PT with Merritt again. There is a nonprofit in our area that helps with the cost of services for kids that need them. The problem is the kiddo has to "qualify" by having a "qualified issue" and some type of developmental delay. I made Merritt an appt for an eval on April 22. I'll keep you guys updated on that one... lets keep our fingers crossed!
As for his LLD, Dr. Ramono disagrees with Shriners' diagnosis in one respect. He believes that Merritt will definately require at least one lengthening. As much as I want to believe that he is wrong, I have to agree with him. So, the problem which faces my family now is, when should we do this lengthening? Should we follow Dr. Paley's advice and have a lengthening done when Merritt is 4? or should we follow Shriners' advice and wait until he is older? Both opinions have valid arguments in their favor. For example, Dr. Romano explained that one benefit of having a lengthening early is that it would help keep Merritt's CF from relapsing. You see, because of the discrepancy Merritt is always tip-toeing which is a big NO NO in the CF world. On the flip side, you can only obtain about 25% of a patient's total height in length during a lengthening. When Merritt is 4 he will be much shorter than when he is a teenager. Therefore, we could obtain more length when he is a teen and that may increase our chances of only one lengthening. I hope this is all making sense... sorry if I am babbling! I guess we really need to wait and see what happens over the next couple of years. Those of you with older children out there know that 4 years old is going to be here before we know it! So, when I allow myself the think about it, I really feel the pressure.
On a lighter note. We dropped off Merritt's little shoe at the orthotist last week to have the elevation put on it... one inch! I think that this will really help him obtain the balance he needs to start walking. He is trying SO hard to walk now. It is so darn cute! Actually, over the past couple of days he has been making huge strides. He has been standing by himself very often and for longer than ever. I better get on my running shoes... I'm about to have a 2 year old and a 1 year old, each running in different directions! Gotta love it!
I want to make sure that we are doing all the stretches correctly, so I am going to start PT with Merritt again. There is a nonprofit in our area that helps with the cost of services for kids that need them. The problem is the kiddo has to "qualify" by having a "qualified issue" and some type of developmental delay. I made Merritt an appt for an eval on April 22. I'll keep you guys updated on that one... lets keep our fingers crossed!
As for his LLD, Dr. Ramono disagrees with Shriners' diagnosis in one respect. He believes that Merritt will definately require at least one lengthening. As much as I want to believe that he is wrong, I have to agree with him. So, the problem which faces my family now is, when should we do this lengthening? Should we follow Dr. Paley's advice and have a lengthening done when Merritt is 4? or should we follow Shriners' advice and wait until he is older? Both opinions have valid arguments in their favor. For example, Dr. Romano explained that one benefit of having a lengthening early is that it would help keep Merritt's CF from relapsing. You see, because of the discrepancy Merritt is always tip-toeing which is a big NO NO in the CF world. On the flip side, you can only obtain about 25% of a patient's total height in length during a lengthening. When Merritt is 4 he will be much shorter than when he is a teenager. Therefore, we could obtain more length when he is a teen and that may increase our chances of only one lengthening. I hope this is all making sense... sorry if I am babbling! I guess we really need to wait and see what happens over the next couple of years. Those of you with older children out there know that 4 years old is going to be here before we know it! So, when I allow myself the think about it, I really feel the pressure.
On a lighter note. We dropped off Merritt's little shoe at the orthotist last week to have the elevation put on it... one inch! I think that this will really help him obtain the balance he needs to start walking. He is trying SO hard to walk now. It is so darn cute! Actually, over the past couple of days he has been making huge strides. He has been standing by himself very often and for longer than ever. I better get on my running shoes... I'm about to have a 2 year old and a 1 year old, each running in different directions! Gotta love it!
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